Celebrating another milestone as my son with Pompe disease turns 5
A proud mother describes her elation about this special day
Last week, we celebrated my son Cayden’s fifth birthday. Birthdays are a big milestone for all children, but this year felt extra special for us. I never knew if I would see this day, and I’m so thankful that I did.
Cayden was diagnosed with infantile-onset Pompe disease the day he turned 1 month old. The news was hard to swallow, to say the least. I was a teen mom and had just found out that my newborn had a rare genetic disease. Although I knew it wasn’t exactly my fault, I couldn’t help but feel a bit guilty about it. Initially, I had no idea what this disease was, but from the fear I sensed in the doctor’s voice, it didn’t sound good.
I remember running to Google to search for Pompe disease and reading some scary and outdated information. Some websites stated that my baby wouldn’t make it to the age of 2, which is news that no parent wants to hear. Thankfully, the doctor who diagnosed Cayden reassured me that the information online was outdated.
She told me about enzyme replacement therapy to slow down the disease’s progression. While it sounded scary at first, five years later, these infusions have become routine in our lives.
In addition to the initial fear of losing my son due to the outdated information, I’ve been terrified of that possibility a few more times over the years. In 2021, Cayden got really sick twice. The first time, he had pneumonia and needed to be intubated, leading to a two-month hospitalization. The second time, he contracted respiratory syncytial virus and was hospitalized for over a month. That time, it was so bad that it caused him to stop breathing and go into respiratory arrest at home.
Both of these hospitalizations were scary. There were days when the doctors expressed to me that they’d tried everything and the only thing they could do was keep him comfortable while he was hooked up to machines that helped him breathe. It’s an image I’m not sure I’ll ever get out of my head. Thankfully, Cayden recovered both times and returned to his normal self.
All of these situations have left me wondering if my son will make it through another year. I’m so proud to say that despite all of the hardships, he has made it to his fifth birthday. Watching your child grow is a bittersweet feeling. While I miss the days when he was a little baby and didn’t have the sassy attitude that he has now, I’ll keep on hoping we’ll make it through another year — day by day.
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